Wednesday, March 30, 2011

To Cellphones and Good Friends

It's fair to say that the arrival of Finlay rather curtailed our social life. Not that we were painting the town red to all hours every night but the occasional evening out with friends or dinner at a restaurant helped keep our sanity.

But that ceased following the birth. Initially it simply wasn't something we thought about. We were so busy coming to terms with our new reality, looking after Finlay, caring for our other boys, working and, if we had the time, looking after ourselves that any idea of socialising was a non-starter.

But as time passed and Finlay became more stable we yearned for a return to some sort of normality. At first we would go out one at a time: a night with the girls for Vicky, a work night out for me. But how could we leave Finlay so we could both go out? How could we get a babysitter able to do BGL checks, set up tube feeds, mix and dose enzymes, treat hypos and, eek, use glucagon???

Luckily we know a few current or former nurses who were glad to let us out for the evening. I'm so glad we had these people around as they gave us the confidence to leave Finlay in someone else's hands for a few hours. Without someone with some medical knowledge to be our first babysitters I doubt we'd ever have had the courage to progress to other friends.

We're also lucky to have had a sick child in the age of cellphones. Halfway through dinner we'll get a message telling us what his BGL was, then we can relax. I don't know how parents of diabetics ever went out before cellphones!

Now we have non-medically trained friends babysitting. It's a lot for them to take on and we would only ask people who were relaxed about it. But it's such a huge help. The cellphone sits on the table. I still get a bit nervous until the text comes through. But that'll ease eventually...probably.

Sunday, March 27, 2011

One of the diabetes bloggers I read recently posted about the reasons she blogs. So I thought I'd explain one of the main reasons I am blogging.

When you have a child born with a rare disorder, or with symptoms that the doctors just can't fathom, one of the overwhelming feelings is loneliness: a desperate need to know what lies ahead, what the doctors can't tell you.

Finding someone who has been through it all is a massive step forward, the lifting of a huge burden. For us, the doctor in charge of Finlay's case giving us a paper about a German girl that had survived gave us the hope we so desperately needed.

Later, through the internet our story was able to do the same for another family. This article appeared in an Australian magazine about a year and a half ago.

If, in the future, a desperate parent sticks 'pancreatic agenesis' or 'born without a pancreas' into Google, hopefully they'll come across this site and will get some of the answers they need.

So, if you're reading this thanks for coming to the site. The more hits, the greater the chance we can be found through the search engines.